Sunday, 12 March 2017

I’ve not been writing for six months now. Mum’s gone downhill - hardly surprising after over a decade with Alzheimer's but a shock all the same. I’ve been a bit in denial, thinking it's just a blip. That she’ll suddenly perk up, back to her energetic self. That she won't be constantly exhausted, physically and mentally. That we’ll be able to walk round art galleries, take train trips and rummage in charity shops. Rather than tiny outings followed by a cup of tea and a long lie down. Actually more like a short lie down, more confusion, another lie down, then back to the rest home.

Yesterday I scooped Mum up and took her shopping. What that means is I drove to the shops and persuaded Mum to struggle out of the car for brief forays into stores. The kind of places Mum used to love to explore. After less than five minutes, Mum’s about to keel over. I ask for the resting chair. It’s simple. If the shop assistant finds one we stay. I might even buy something. If they don't, we leave.

After three shops we give up, deciding to drive to my place for a sit down and a nice cup of tea. “Is there any other sort?” asks Mum.

We approach the house and a sad looking person shuffles, hunchbacked, across the road. “Looks a bit depressed,” I say brightly. I’m driving slowly now, searching for a park.“I’m depressed,” says Mum.“Are you?” I say, struggling with the small parking space and a suitable reply. “About what in particular?”“About the lack of a future,” says Mum.

It seems important not to dismiss this. To stay with it even though I have no idea what to say. I park the car. “It must be hard, being 88 …”“I’m not depressed about being old. It’s just that … I’m not good at anything anymore.” Mum gazes out the window. “I’ve used up my ticket.” “Used up your ticket. Used up your ticket!” I can’t stop saying it. I have images of fun fairs and Eurorail passes. Mum gives me a look. “That’s sooo good, ‘You’ve used up your ticket’.”

We look at each other. “You’re such good company,” I say. Mum smiles and squeezes my arm. And I think about how much Mum loves to see me every Saturday, how she always notices my hair and my clothes, how she picks up on my mood. How she asks about the children realising all the time she has no idea where they live or what they're doing. How, in the moment, Mum has lost none of her conversational spark.

*****

We’ve sat on the sofa, drunk tea and eaten tomato sandwiches. Mum’s preparing to go home, fussing about what she might have brought with her and whether she still has it. She’s not sure where we’re taking her - she’s tired and can't summon the rest home to mind. We’ve been out for less than two hours.

“I’ve had such a lovely day,” says Mum. She kisses my hair. “So have I.”

Monday, 1 August 2016

I've just returned from five weeks overseas. Our big overseas holiday, in the planning for almost a year.
Naturally, I was excited as could be. But as our departure date got closer I became increasingly worried. What started as a vague feeling of unease gradually turned to anticipatory guilt.

How would Mum cope? No Saturday outings for five whole weeks. No one picking up when she phoned my house. No one dropping by to sort things when she became confused, bored or stuck.

It wasn't like I was the only family member who could help. But I'm definitely the one she relies on.
It became obvious I had developed a bad case of 'the indispensibles' - a chronic condition where the sufferer believes they are the only person in the entire world who can meet the needs of a particular person or situation.
As soon as I realised that, things improved. And with a bit of trial and error I came up with some things that actually worked.

Here they are - my top tips for carers who are taking a holiday.

1. Keep the run-up short
I noticed early on that as soon as anyone made reference to the impending family holiday, Mum became anxious. So I stopped mentioning it. Whenever Mum brought it up I told her it was ages away. That really helped - Mum was reassured. She stopped worrying and eventually forgot all about it. I didn't revisit the subject until a few days before our departure. That strategy saved months of unnecessary angst.

2. Simplify the info
First time round, I got this completely wrong, printing off our itinerary and giving it to Mum. "It's extremely complicated," she said, struggling through the two page document. So I binned it and started started again, from scratch.What does Mum need to know?Who was going on holiday. When we were leaving. What else? The countries we were visiting. The date of our return. That was all.
I typed it up in extra large font and printed it out. Then I taped it to the wall next to the wardrobe. By the time I got back it was still kicking round her room. Mum had obviously been looking at it.

3. Accept all offers of help
As our holiday got nearer, friends and family started asking what was happening with Mum. When my Australia-based sister asked what she could do to help, I suggested she pop over for a few days. Friends of mine, who Mum has known for years, offered outings and afternoon teas. My lovely sister-in-law told me she'd like to take Mum out on a couple of days. I accepted all offers graciously, on my mother's behalf. And to make sure Mum got the most benefit from all this generosity, I put together an itinerary that covered all five Saturdays. For me, the relief was huge. And Mum had a wonderful time with all her new visitors.

4. Let the staff know
Even with the itinerary posted to the wall, Mum was bound to wonder where I'd gone. So I talked to as many staff as I could, telling them what was happening. I emailed the rest home manager and copied in the head nurse. When I got back I was greeted with hugs all round. Mum's carers knew exactly where I'd been. And so did Mum.

5. Send regular updates
I gave up on postcards a while back. First there's the inevitable time lag. If it's a short trip, by the time the postcard arrives, I'm already back. In the unlikely event that they arrive in time, without me to read them to her, the postcards are put aside or pinned to the noticeboard never to be read again. Instead, this trip I sent Mum a series of emails. I addressed them to staff who printed them out and handed them to Mum. The news was fresh, immediate and able to be read and reread. I aimed to do one every three or four days but only managed a total of five. Not too bad - one a week.

"Five weeks?!" said Mum when I told her I was going away. "I doubt I'll be alive when you're back."

When we finally arrive at Wellington airport, my mother is part of a noisy welcoming party. There she is, right in the thick of it all, smiling and crying. "So lovely to see you all," she says, kissing and hugging the grandchildren. "Safely back."

I tell Mum she’s none of these things. That she’s still perfectly intelligent, that everything she says is completely reasonable. Which is true.

Sometimes we talk about intelligent, reasonable people who have also been diagnosed with Alzheimer's - Alison Holst, Iris Murdoch, Margaret Thatcher. “Margaret Thatcher!” says Mum. “I’m not too sure about her.”

2. What’s happened to my house?

“We sold it. All of us decided together, us kids and you.” I tell her it was too hard to keep it going, a big old house in the country. With a huge garden to look after. Then I explain it’s been more than six years since she moved out. “Amazing, isn't it?”

“Yes,” says Mum. “It certainly is.”

Sometimes Mum asks what’s happened to her things. I tell her we went through everything that was precious and made sure someone in the family would look after it. “You young people can’t imagine what that’s like,” says Mum. “It’s a very strange feeling.”

3. What can I do to get better?

“I don't think the memory problem is curable,” I say. “But I’m pretty sure you can feel a lot better than you do right at this moment.”

Then Mum asks me what’s needed for her to get better. We talk about staying active, saying yes to everything - walks, trips out with other residents, knitting projects, doing the crossword and being social. About keeping body and mind active to improve her mood. “Right,” says Mum. “I really need to lift my game.”

4. Do I have a future?

“What exactly do you mean?” I ask. Mum knows I’m stalling. She tells me she needs hope. So we talk about what she’s looking forward to - next Wednesday’s drive with Rachel, grandchildren coming to stay, Louise coming over from Australia ...

5. What’s the matter with me?

“You have a problem with your short-term memory …” Then Mum and I talk a bit more. After a while I say, “Shall we go out?”

Thursday, 12 May 2016

Mum’s definitely slowing down. And it’s the physical stuff I notice the most. When she first moved to the rest home, Mum could walk confidently almost anywhere. She pottered around by herself - down to the shops, off to the library and round the block for regular walks. Now, outside of her room, she can barely manage a few steps without reaching for the support of my arm. The woman who took up yoga in her fifties then practised it religiously, every day for twenty years, now has the flexibility and spring of an abandoned sofa. Speaking of which, getting off the sofa is now a major operation - Mum counts, “One, two, three,” and I haul her up with both hands.

Suddenly, Mum seems to have lost all traces of aerobic fitness. A short stroll from my place to the corner store now seems like a half marathon. Mum stops after a few dozen steps to lean on a fence. Or admire some tiny flower. “How much further?” she asks. “I don't think I can go on.”

I’m a bit mystified by all this. There’s so much happening. Some of it’s obviously mental, while other parts are clearly physical. Over the past few years, Mum’s developed rheumatism in her knee. Medication lessens the pain but the stiffness persists. The combination of the two has caused Mum to stop walking which has seriously eaten into her fitness levels.

Then there’s the unsteadiness. My mother, who used to be quick, nimble and gardening-fit, is now positively teetery. Her shoes of choice are no longer sensible ones - old lady sling backs with nylon socks and slippery heels. For some reason, she’s losing sensation in her feet and with it her balance.

It’s a vicious circle that's spiralling downwards.

According to the research, physical exercise helps people who are living with dementia. A lot. An elevated heart rate increases blood flow to the brain, which slows cognitive decline and improves mood. Certainly some mood-enhancing activities wouldn't go amiss.

But life in a rest home doesn't encourage physical activity. There’s trips out in the rest home van, and resident’s rooms are vacuumed and their beds made by staff. Meanwhile residents spend long periods sitting and lying down.

When Mum phones me at work, bored and lonely, I used to suggest she went for a walk. These days Mum tells me she has no-one to go with. It’s true and without someone alongside to motivate and support her, Mum probably wouldn’t make it out the gate.

For Mum, her lack of fitness and energy is the thing she’s hating the most. So I’m trying something new.

Every Saturday I swap her slingbacks for a pair of runners. Whatever we do now includes a fifteen minute walk. It’s compulsory.

And these days, I’m mostly working from home. So I’ve started taking breaks, during the week, to walk with Mum. Five minutes to drive to the rest home, five minutes to get her ready, then a 15 minute walk. I’m back at my desk in under an hour.

The process is interesting for both of us. At the start we feel lazy and unmotivated. Mum’s knee hurts, she’s tired and the weather’s not the best. “It’s a bit inclement,” says Mum as we set off. We walk a bit further and things improve. Mum’s knee is starting to loosen up, our bodies are getting pleasantly warm and our feet have found a slow rhythm.

“There’s nothing like a walk,” said Mum the other day, as we made our way back down the hill to the rest home. “It makes you feel like you've achieved something.”

Saturday, 2 April 2016

It’s been almost a year since I first put together a playlist of Mum’s music. Trawling iTunes for the greatest hits of the 1940s and 50s, Mum and I happily rediscovered the songs of her youth - Perry Como, Frank Sinatra, Vera Lynn and the rest.

Once the compilation was burnt to a CD, I played it for Mum, wherever I could - in the car, on the stereo at home and more recently in her rest home room, through an 80’s style ghettoblaster. Mum seemed to like the ‘stereogram’ but despite my best efforts, she was completely unable to work it. Plus it occupied valuable space, on the tallboy, in her tiny room.

After a few weeks Mum confided that she wanted ‘that thing’ gone. I took it away.

Then I stumbled upon Playlist for Life - playlistforlife.org.nz - a UK-based organisation that “works to bring the benefits of personally meaningful music in dementia care to as many people as possible.” According to them, the best way by far, for people with dementia to experience music, is through headphones connected to an iPod.

I immediately bought a pair of over-the-ear headphones. Buying a cheap version of an iPod was another matter altogether. The thing is, no-one makes them anymore. Almost everyone keeps their music on their phone. Which has to mean people are throwing iPods out.

Happily, a little while ago, a discarded iPod found its way to me.

My daughter and I set to work, finding as many songs as we could from Mum’s early years. We copied them to the iPod. Last Saturday I packed the iPod and headphones in a gift box and set off for Mum’s rest home.

This is how it went:

I carefully position the headphones on Mum’s head and we scroll through the list of artists. “Chopin,” says Mum. “I’d really like Chopin.” The effect is immediate and extraordinary - the look of amazement as the sound hits then surrounds her. The delighted moment of recognition as the waltz begins. Then three minutes of total mental and physical absorption.

First it’s her fingers - Mum’s ‘playing’ the piece just as she remembers playing it herself, on the piano, many years ago. Then the orchestra comes in - now Mum’s conducting, then she’s back to playing. Next thing she’s on her feet, crying and swaying from side to side.

“Can you hear it?” shouts Mum. I shake my head. Then I hold her to keep her from falling and we dance a little, together. Mum’s laughing and crying - both.

“It’s making me very emotional,” she shouts. “So strange, that I can hear it and you can’t.” The concerto ends and Mum collapses onto the bed.

We scroll through the artists list again. “Oooh, Inia Te Wiata,” says Mum. “Old, old songs. Where did you find these?”

Before I can reply the music starts and Mum’s away. They're Maori action songs and Mum’s got all the actions - clapping her hands together, slapping her knees and doing that diagonal arm cross thing. Then she begins to sing, in a thin voice, almost wailing, her eyes closed in deep concentration. At first she’s tentative, as though she’s mislaid the words somewhere and can't quite find them. She gains confidence and before long she’s found both the words and the confidence to keep up. All the time, she’s crying and singing and telling me how it’s taking her back. “Back a long, long way.”

“When did you learn those songs?” I ask. “Who taught you?” We’ve finished and we’re walking arm-in-arm along the corridor, out of the rest home.

“I have no idea, I just can’t remember, “ says Mum. “I was brought up with them. So long ago and it’s all gone.” She’s wobbly and teary and amazed.

“You’re still crying,” I say. “Is that good crying or the other sort?” “Good?” says Mum, “Oooh yes, it’s good! That was extraordinary.” Then she stops and grips my shoulders. “When can we do that again?”

Sunday, 28 February 2016

Mum loves jokes - like all of us. Well almost all of us. I guess there will come a time when, for Mum and me, humour won't work anymore.

Meantime, my mother still gets the daily newspaper delivered to her room. Several times a day she studies the headlines, browses a few stories and checks out all the death notices. “I always read the family announcements,” says Mum. “It’s important to see what’s happening with my contemporaries.”

She also shares the occasional cartoon, with whoever’s around.

There’s one cartoon Mum particularly likes - a series of wry observations on children and parenting. Called The Little Things www.littlethings.co.nz - it’s nothing more than a few words alongside simple line drawings of children and their exasperated parents.

It’s a great formula for Mum. The whole joke contained in a single frame. Instantly recognisable behaviours. Nothing here that’s much different from when my mother had young children and nothing that relies on recent memory.

The first was a self-portrait by Van Gogh. The one of him with the extra-large ear. ‘When you hear your name in a conversation’ said the text. This was followed by Rembrandt’s dark, brooding self-portrait. ‘If it it ain't Baroque, don’t fix it.’ Harriet and her grandmother were highly amused. They spent a happy half hour searching up the best examples they could find.

When Mum’s birthday came around, Harriet knew exactly what to make - a special collection of classical art memes.

“Great idea,” I said, then warned her against making a book. “Your grandmother will read it once then put it away. You need something like a calendar. Something designed to go on display.”

So Harriet settled on the desk calendar format, spiral-bound, with one classical art meme for each month of the year. She set to work, choosing the most recognisable art works and culling anything too rude or obscure. It took quite a while.

By the time the calendar had been ordered and arrived, we were already a couple of days post-birthday. Harriet picked it up and hurried round to the rest home.

To say Mum loved it would be a huge understatement. She adored it. The calendar was so well produced, Mum was convinced it had been bought ready-made. Harriet tried, but failed, to explain the concept of customised, cut-and-paste calendars. But Mum was too busy checking it out.

“I’m delighted,” said Mum, leafing through the calendar for the third time. Then she flicked back to the start and went through it all over again.

“You know dear,” said Mum. “I recognise all of those paintings.” She put the calendar down.

Wednesday, 3 February 2016

When I was young, adults used to say the stupidest things. My favourite? “You’ve got a monkey on your back, young lady.”

Small children would glance nervously behind them, older ones would deny it, getting crosser and less cooperative by the minute. Ridiculous.

I’ve been struggling, these past couple of weeks, with Mum. And after all these years, monkeys have come to mind. She’s been constantly exhausted, grumpy and verbally aggressive. Then there’s the relentless negativity - describing everything and everyone as ‘boring’.

I’ve been doing my very best. Trying to separate the illness - Alzheimers’ - from the person. But it’s hard not taking the slights and the sullenness personally. And I’ve been wondering what it’s all about. Maybe this is what I’ve been dreading - a sudden, rapid deterioration in Mum’s condition.

On Friday afternoon, I pop round to the rest home and Bev the nurse takes me aside. She’s worried about Mum. So are the care staff. Every day, for more than a week now, it’s been almost impossible to get Mum going. She refuses breakfast and lies in bed all morning, declining numerous offers of help. At lunchtime she drags herself out of bed then retreats to her room as soon as it’s over. Straight back to the horizontal.

Bev and I agree that, of themselves, these behaviours aren’t unusual. As Alzheimers’ has progressed, my mother’s mood, energy and initiative have been increasingly affected. Mum has good and bad times - sometimes for an hour or so, sometimes for a whole day. But an ongoing pattern of passivity, negativity and hostile outbursts? That’s new.

Bev has a couple of theories. Maybe Mum’s medication regime is knocking her out. The anti psychotic and the sleeping pills no longer working for her. Or maybe it's what we both fear - a significant step in the process of cognitive change.

“I’ll talk to the doctor,” says Bev. “Suggest that he cuts back the sleeping meds and reviews the rest.”

Bev phones the following afternoon. The doctor has taken Mum off almost all her medication. As of last night.

Next day, Mum’s a different person. Up and dressed before the staff have knocked on the door offering to shower her. Greeting me happily when I breeze in after lunch. I find Mum perched on her bed, reading a magazine, dressed and ready for a trip out.

Her room looks different too.
“I had a bit of a sort out,” says Mum. Peggy squares and books are in neat piles and the photos and ornaments dusted and rearranged.

*****

Mum and I spend a sunny afternoon exploring Ascot Street - one of the oldest roads in Wellington. Possibly the steepest as well. We peer over picket fences, admiring late blooming roses and japonica trees festooned with pear-like fruit. We rest on the seat where the road narrows from a tiny one-way street to an even smaller brick-edged path. We wander into shops, poring over fancy second hand shoes and handbags. “Consignment Boutique,” says Mum, reading the sign in the window. “Whatever next!”

Mum’s short term memory’s as bad as ever. It may even be worse.
“Where are you from?” asks the chatty shop assistant. “Wellington,” says Mum. “I’ve lived in Wellington my entire life.” Fifty two years of rural living temporarily wiped from my mother’s memory. But she’s happy and mentally energetic, if a little puffed.

Searching for a tea shop we arrive at a cosy pub, where we plonk ourselves down in the courtyard. We order tea and sit, soaking up the late afternoon sun.

“I’ve had such a lovely afternoon,” says Mum. “Not just lovely but interesting too. I’ve spent years walking round Thorndon. But I’ve never been up that street.”